Commentary

Disabled Are Fearful: Who Will Be Next?

October 29, 2003|Stephen Drake | Stephen Drake is the research analyst of Not Dead Yet, a national disability rights group.

Bob and Mary Schindler consistently refer to their daughter, Terri, as a disabled person. They're right.

Although most newspapers are covering this story as an "end of life" or "right to life" issue, what ultimately happens to Terri Schiavo will affect countless other people with disabilities in this country.

Like many disabled people, Terri Schiavo is unable to tell us what future she prefers. She left nothing saying she preferred starvation to living with a disability. She never signed a legal document designating her husband as her surrogate in the event she became unable to communicate.

Despite this, media commentary is dominated by bioethicists and "end of life" experts telling us she should be left to die and explaining how "peaceful" starvation is as a way to die. To hear them tell it, Schiavo has no meaningful life. She can't talk, they say, she can't eat on her own, can't walk and has no control over her bowels or bladder.

Thousands of people with disabilities across the United States are watching the case anxiously. In fact, 12 national disability groups have filed "friend of the court" briefs in opposition to the efforts to starve Schiavo. Obviously, we want to know how all those commenting in this case feel about the lives of people with Down's syndrome, autism, Alzheimer's and other disabilities. Are they next for death through starvation? It's not so farfetched.

I was born brain-damaged as a result of a forceps delivery. The doctor told my parents I would be a "vegetable" for the rest of my life -- the same word now being used for Schiavo -- and that the best thing would be for nature to take its course. They refused. Although I had a lot of health problems, surgeries and pain as a child, I went on to lead a happy life.

Up until the mid-1980s, U.S. pediatrics journals routinely published reports on the selection criteria used to determine which disabled infants born in hospitals would be left to die.

One of the most notorious incidents involved a team at Oklahoma Children's Hospital in the late 1970s that used a "quality of life" formula for children born with spina bifida that factored in the parents' economic and educational level. Poor and uneducated parents and those on public assistance were more frequently advised to not treat their children. Twenty-four babies with spina bifida died, mostly from untreated infections. Not one person on the medical team was charged with a crime.

About 20 years ago, a hospital staff in Indiana was starving an infant with Down's syndrome. A whistle-blower alerted authorities, and the district attorney went to court to order hydration. The judge refused. Public comment supported the idea that "difficult" decisions like starving disabled infants were best left to the privacy of doctor-parent consultation.

In spite of that, enough of the public was sufficiently outraged to create a stir that cut across the political spectrum in Washington. As a result, congressional legislation was drafted to prevent medical killings of disabled infants.

The legislation, which ultimately was passed, was decried by bioethicists, physicians and others as an attack on both the medical profession and the privacy of family decisions. As a result of the passage of the law, though, more of us avoided getting killed in hospital nurseries through denial of treatment.

Guardianship -- which in this case was granted to Schiavo's husband by the courts -- has to have limits, especially when the stakes are the very lives of the people under guardians' power. It's important to remember that guardians have power over people, not property, and those people still have rights.